I'm in my third week of a seven week course of radiation (or, as I like to think of it, 12 treatments down, only 22 to go). While I am experiencing a little difficulty swallowing (so I'm focusing on soft but still solid food), I am nowhere near having any nutrition or hydration problems. I am also receiving chemotherapy during this period and when I saw the oncologist Monday, he pushed hard for me to go ahead and get a feeding tube. A few more facts: I haven't lost any weight even during the induction round of chemotherapy, I didn't have surgery, and I haven't thrown up once.

Given that I seem to have tolerated all this pretty well so far, am I being stupid in resisting the feeding tube? It seems really drastic in light of how I'm doing so far. I know it gets significantly harder as time goes on but I can't help feeling that we're jumping the gun if I'm not experiencing that much difficulty yet.

Thoughts? (and thanks in advance)
Laura

Hi Laura,

The feeding tube is nothing at all to worry about. It's a piece of cake to have put in. Takes about 20 minutes with little or no pain. As your throat gets sore in the latter stages of your radiation it will be much easier for you to input the needed calories and water. If I were you I would have one put in. Dan

Hi Laura,
I resisted the feeding tube and lost over 60 lbs in the process. I had to be rehydrated in the hospital twice. 12 treatments is still a little early to feel the entire effects of the radiation beast! I have mixed feelings about whether I should have gotten the tube or not. The weight loss was something that the doctors gave me a hard time about. I did look pretty gaunt for a while.

However, at three months post treatment I was eating anything I wanted, even spicy things. My swallowing today, at almost 6 months post Tx is just about normal. I can go to a restaurant and clear the plate. I have gained back almost 20 lb's and add about 2 lb's a week on average. Was this a benefit of NOT getting the PEG tube - I don't know, but it may have played a role.

I got through the rough spots with additional morphine pills for the breakthrough pain prior to eating or drinking on top of the Duragesic patches I was already taking for long term pain relief.

PEG tubes are part of standard practice guidelines for head & neck patients so it is no surprise to me that they are pushing it. There is a SMALL minority of us here who did fine without one. Some of my doctors practically considered it AMA (Against Medical Advice) not to get it while others (like my oncologist who is a head of department) weren't too terribly concerned.

You can always have one put in later if you need it, but don't wait until you are too beat up or they might hesitate to install it. Work out an agreement with your primary doctor that if your weight gets below a certain level, then schedule it in, if this is what suits you.

You also didn't mention the type of radiation you are having. I had IMRT which minimized tissue damage in the throat, I am sure that it made a big difference.

It sounds like you are tolerating chemo really well! I am still having physical therapy for all the time I spent hanging over the toilet bowl ;-)(that IS a little exaggerated but I was sick a lot).

"To get" or "not to get" is a controversial subject and I am sure that you will be able to sort this out once you get more information.

Hi Laura,
My husband is just finishing up his 40 radiation treatments. Although he didn't have the mouth sores or pain associated with the radiation he did need the feeding tube by the 4th week. Believe me, to this day he wonders how anyone could do this treatment without one. As a caregiver, it makes life alot easier. As my husband lost interest in food at least I was able to give him the nourishment he needed through the tube. Also, juicing a ton of vegetables kept him regular. I would highly advise getting one just in case. The last thing you need are complications from dehydration or malnutrition.
Take care.
Wendy

Hi Laura,

Great that you are not having too much trouble.

I was one of the folks that didn't get a tube. My personal feeling is the less they do to you the better off you are. (less potential for complications). I know there are people here that feel the PEG tube was critical. To me, if you are doing well without then it will not hurt to wait and see. Just don't try to be a hero.

There is a benefit to chewing and swallowing normally during this period. Swallowing involves a number of muscles in the area and these need excercise just like any other muscle. (Use it or loose it) Radiation will affect these muscles to some extent and regular use (swallowing) will help.

My swallowing during treatments hurt like hell, and those of us that had tonsillectomies get more hurt for the dollar as well. I was able to get by with the help of a blender. I "blenderized" anything: eggs, Steak, hambergers (an entire Whopper with cheese worked). I ate pretty much what the family was having at meal time plus in between. Eat when ever you are able.

Be sure you are getting more than just calories, Protein is especially important because of the tissue that is being rebuilt at a high rate. The importance of water cannot be over stated.

Keep up the good, get rid of the bad.

I had a terrible reaction to radiation but nevertheless I resisted the PEG tube. The idea of not swallowing terrified me. By my third week of treatment I was barely doing liquids and was in a lot of pain. Finally things were so bad I had no choice but to get the tube - by this time I was in the hospital on TPN. I guess my feeling is don't get it if you don't need it but for many of us it is literally a life saver. I think part of my fear was because I had been told that not many people needed a tube (wrong!) and so I became afraid that things were going so much worse than expected that the outcome was going to be terrible. Once I did get the tube my recovery sped up incredibly. I never liked the tube, it was always somewhat uncomfortable but I knew it was necessary and I did what I could to get rid of it as soon as I could. In my case getting the tube was more complicated. My throat was so bad that they didn't think they could put the tube in that way so I required stomach surgery - further complicated by having previous stomach surgery and adhesions. Also, because it was after radiation, the docs were concerned that they couldn't get the breathing tube down my irradiated throat. I was lucky, it went ok but the surgery right before mine was cancelled due to that problem.
As with all of this, everyone is different so all I can really suggest is to get all the info you can and do what you think you are most comfortable with. I told my swallowing therapist there was a treatment decision I wish I had made differently and she told me the potential complications of the opposite decision. Her advice was to not beat myself up worrying about what maybe I should have done.
Good luck with your treatment and decision.

Hi: from Swift Current, Canada
I would highly recommend the PEG tube. For the small discomfort of insertion and removal, the benefits far outweigh the detriments. Prior to my treatments taking place I was a slim 6'2 168 lb 47 year old male. Even with the tube, I dropped 24 lbs , but am gaining the weight back now. I used the tube for the last 2 weeks of radiation and for the 2 weeks after completion. I am now happy to report I am eating anything and everything. I am new to this site ( wished I had found it sooner)and have found it a wealth of information and comfort. I have SCC III, Right tonsil ( removed) T3nomo. I had 3 cisplatin chemos and 35 rad treatments. Although only a month or so removed from treatment, I am cominbg back to my old self.

Doug A

You are very early in your treatment. I would'nt have made it with out a PEG tube. After about 4 weeks of radiation my tongue and throat were so swollen and sore I didn" eat anything for 71/2 months. I can finally eat some but it takes so long I don't eat much. I'm glad I have the tube to supplement my nourishment.

Laura............The Doctors are not lying when they say your mouth will be too sore to eat and swallow. My first few weeks of RAD and Chemo sailed by. I thought I was gonna be one of the "lucky" patients and that somehow I wasn't gonna suffer from a very sore, swollen, and burning oral cavity and throat. I was wrong. By the end of my second chemo treatment I had all I could do to get enough water in me to keep hydrated.

Food became an issue for me. In order to heal and keep hydrated I had to have nourishment, yet I wasn't hungry, the food didn't taste like food, and my appitite was gone. PEG was there to save the day for me. With the PEG, I was able to get the nourishment I needed and I was able to get and keep enough liquid in me to stay out of the hospital. Keeping yourself hydrated becomes quite a feat when going through treatment. It took me more than a few times to figure out how much water I needed to keep myself hydrated and out of the hosptial, sicker than a dog from not enough liquids.

You'll have other things to worry about while going through treatment and you need to save your energy for other things besides worrying about eating and nourishment. The PEG tube allows this. I had no problem with PEG. None at all, and I kept the tube in a bit over a year until I was confident that food and caloric intake were no longer an issue for me.

I would not hesitate for one second to have a second PEG if the need ever arise. The procedure to put the tube in takes about 20 minutes and to remove the tube took maybe 20 seconds. The tube is odorless (I was worried about that) and it fits nicely underneath your clothing. Nobody will ever know you even have a PEG unless you point it out to them.

I can't think of any reason not to have the PEG tube, but I can think of a more than a few reasons to have one. In this case, it is a good thing. Good luck with your contining treatment and keep us posted. Sincerely, Donna